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I was diagnosed with AIDS back in 1994 and at that time I thought I had about five years to live. I've been through every know AIDS drug regime and they finally found the right formula that has kept my viral load undetectable for three years now. There have been times in my life when I wondered if I would make it, but I'm still standing.

My question and issue is that, since I was force to take part in Medicare Part D, the plan has change from year to year. This past year, since I am slightly above what they deem as low income, I now have to pay for drug co-pays that are not under the ADAP umbrella. They are ridiculous for someone on a fixed income to pay. I've spent $500 a month and as of this date 2,500.00 this year for co-pays. That's one third of my fixed income.

California has come up with a way to help people like me and it's called the "250% working disabled program" if you qualify, it brings your share of cost down to "0" and you pay a small monthly premium. You have to provide a letter or check stub that states that you are employed and have earned more that $1 a month. This also automatically qualifies you for LIS. Low Income Subsidy. I know it all doesn't make any sense but this is the government we're talking about!

In this past month, I maxed out my credit cards paying for co-pays. I applied for the program because I was doing some small work about 12 hours a month. The beginning of May I was approved for the program and I had to wait for an award letter. It came on the May 12 th. Now mind you I've been without my medication since May 1 st. but the insurance company (Health Net Orange) as well as the pharmacy (Walgreens) refused to act based on the Award Letter from Medical. They said they had to hear from S.S.D. or Medicare to do anything. In case a situation like this occurred, Medicare set up a policy called the BAEP (Best Available Evidence Policy) to deal with these gap issues of communication for the three main entities. Health Net Orange and Walgreens still refused to acknowledge and cooperate.

Their ignorance has cost me countless hours on the phone and anguish and now I still will be out my medications till at least the 18 th of May or longer. I've explained to both the insurance company and the pharmacy that the AIDS medications covered by ADAP are not the only things that keep me alive and well. The other medications play a part in my wellness and quality of life as well.

I know this may seem a bit dramatic but this is nothing personal, this is my life I'm fighting for.

If anyone out there has a suggestion on how to legally pursue this or just get this out there in the public eye. please let me hear form you. I'm not out for money, however getting back some of that $2,500 would be nice but it's more about saying "THIS JUST AIN'T RIGHT!" and slapping the wrist of any insurance company or pharmacy. They had a legal document from the State of California stating that I qualified for a government program and they both chose to ignore it thus denying me the medications I so desperately need.

I feel like my patient rights and civil rights have been violated. Someone that has lived through what I have lived through should not be put through this. I think someone needs to stand up and say "NO" that's not right!

Man......your Health Net Orange really sucks......my suggestion to you would be to find another Part "D" provider in your area, like Silverscript or Humana also, I would go HERE: http://www.medicare.gov/ and pick a plan, that suits your needs, I too 'am borderline with my income in regards to just what I can qualify for, so, I know the feeling, and what your going thur......take a look around, and you might find something that fits your situation

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"it's so nice to be insane, cause no-one ask you to explain" Helen Reddy cc 1974

Thank you for the advice. As soon as this all blows over I'm going to go with a pharmacy that is more of a patient advocate and knows what's going on. Unfortunately I'm stuck with Health Net Orange until November when I can register for another part D Program.

I don't know what they were thinking when they put Medicare Part D into the hands of Private Insurance. They put no fixed rules in place and as a result the plans terms change from year to year.

I'm tired of the bullcrap and I'm sure you are too. I've contacted the ACLU and don't know if I'll get anything from them but I do plan to contact a lawyer and find out what my rights are. It's really not about any money, it's about being tired of putting up with insurance companies having us by the balls when all we are trying to do is live our lives to the fullest.

I lived my life, worked hard, and paid into the system. I have a right to every penny that I'm paid by SSD. Taking a third of that income from someone that is disabled and on a fixed income just to pay for medications that keep you alive and provide a quality of life is just not right!

Shame on Health Net Orange. Shame on insurance companies trying to make a profit off disabled, fixed income Americans.

To be quite honest I'm surprised at how few people are using this forum any more. It used to be a hot bed of discussion and interaction.

Yes, come NOV 2009, I'd do what I have to do..........LOOSE the Heath net Orange...I do understand, every yr. I have to find another plan, but, the good thing is, there are many to choose.....Good luck, I do hope you get this FIXED, at least before NOV 2009.......

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"it's so nice to be insane, cause no-one ask you to explain" Helen Reddy cc 1974

My plan changes every year too, but after the first year the state of Pennsylvania's ADAP program started handling the switch over for us if we wanted, but yeah I still have to pay for one generic that isn't on the ADAP formulary. Technically states are given large leeway with what they can put on their own formularies, and I'm quite sure that I read that due to budgetary constraints CA had cut back on stuff. As a rule it is hard to talk about these things on this board as they vary from state to state, so maybe someone from CA will speak up.

I understand how fortunate I am to even have ADAP. There are some states that have nothing. One of the problems I have is that I'm on a lot of drugs, half of which are not on the ADAP formulae. I don't mind small co-pays but mine are based on someone that doesn't receive extra help so that means my co-pays can be anywhere from $2 to $90 and for the ones that are really expensive it's 5% of the actual cost of the medication. Every medication I take has proven to be helpful and has improved my quality of life. That makes things very financially difficult on a fixed income. That's why I enrolled in the 250% working disabled program that would make me eligible for extra help. The real point here, is that the insurance companies that control Medicare Part D should not be able to make changes in the plan from year to year. That's something that we didn't know we were signing up for not to mention force into and that a fact that is nation wide.

"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

Well, your lucky to have ADAP, I don't, and I lost my Extra Help when my State no longer pays for my medicare premiums any more.....so, I lost 1,200 a yr. PLUS the Extra Help, I used to get, and to top it all off, I cannot get ADAP in my State due to making too much SSDI, so, I know how you feel, I too have large co-pays as well, with out any help what-so-ever, sounds like you have it better than I do..........

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"it's so nice to be insane, cause no-one ask you to explain" Helen Reddy cc 1974

Uh, isn't New Mexico's ADAP cut off 400% of the federal poverty level? That's better than what it is in Philadelphia, and I can't imagine that the cost of living there is higher than here in the northeast. That should mean your cut off is $43,320/year.

I make a pretty decent SSDI due to having worked in NYC when I went on disability but still qualify even with my state's lower threshold -- if I lived a mile across the river in New Jersey the ADAP cut off would be 500%, not my current 337%.

If you want to see what each state's ADAP financial eligibility criteria is look here:

I'm not familiar with Medicare. You mention you are in California. Take a look at AHF Pharmacy. I use this pharmacy in Florida and they have locations in California. They are not for profit. The WeHo location actually helped me a few months ago with a week of meds (free) when I had forgotten mine while traveling. They're not overly concerned with co-pays, only that the community receives their meds. They may be able to help you with your meds in the meantime.

Uh, isn't New Mexico's ADAP cut off 400% of the federal poverty level? That's better than what it is in Philadelphia, and I can't imagine that the cost of living there is higher than here in the northeast. That should mean your cut off is $43,320/year.

I make a pretty decent SSDI due to having worked in NYC when I went on disability but still qualify even with my state's lower threshold -- if I lived a mile across the river in New Jersey the ADAP cut off would be 500%, not my current 337%.

If you want to see what each state's ADAP financial eligibility criteria is look here:

I dunno........I was told, that ADAP isn't needed in my case, since I have part "D" and a medicare provider ( where I get my MEDS every month) but, if I did need ADAP, (if I couldn't afford my meds) my ASO told me that they have other programs in place besides ADAP as it's only Temporary here in NM, or at least that is what I'm being told, maybe I need to ask for another ASO case-worker, not all of them are Good, some, just don't care or, even know what the deal is here in NM, I've had 6 different ASO case workers in the last 7 yrs I've lived here, and they all tell me something completely different, so something just isn't jiving here.............not to mention that I get a new ASO case worker every 6 months now, so, no wonder everything is a mess........... I can tell you this tho, I can get all my meds every month, and I only have co-pays for the 1st 3 to 4 months out of the yr. than after that, I pay NOTHING, until the following yr. now not having the "extra help" anymore, is anybodies guess what will happen , even my ASO case workers don't know the answer to that one?.......guess I'll find out?

« Last Edit: May 17, 2009, 12:52:05 PM by denb45 »

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"it's so nice to be insane, cause no-one ask you to explain" Helen Reddy cc 1974

This is why I encourage people on these programs to find a local HIV support group -- this allows you to double check with other people on if you're actually obtaining the correct information from a case manager.

This is why I encourage people on these programs to find a local HIV support group -- this allows you to double check with other people on if you're actually obtaining the correct information from a case manager.

When I 1st moved here to NM back in 2001 they used to have a local HIV support group, but, in 2003 or 04 it was disbanded due to the lack of interest or maybe the lack of funding, I went to it only once, and I really wasn't empressed by other POZ guys trying to pick me up before I could even get outta the place, so, in a way I'm kinda glad it's NO MORE, that alone made me feel very uncomfortable, and due to this, I never returned, I went there for support, and not to pick up anyone, I even complained about this, to my local ASO, and got NO-WHERE...........the nerve of some queens

« Last Edit: May 17, 2009, 02:16:33 PM by denb45 »

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"it's so nice to be insane, cause no-one ask you to explain" Helen Reddy cc 1974

Well I busted my butt trying to get this resolved before the weekend to no avail. I don't really have any issue with ADAP however I think they should broaden their scope of drugs covered. It's really now just a stand off between Medical vs Medicare and their lack of being able to communicate between each other and I guess you can throw SSD into the mix. I don't think the question is if, I think it's when and until that happens I stuck without my medications.

Even after this issue is resolved I plan to still write whoever I have to to change how Medicare Part D works in the hands of private insurance. We were never told when we were forced to pick a plan that the plan had the right to change the terms every year. I think if we had know that back then there would have been a whole lot of stink. It simply isn't right that the private insurance profits off the disabled who are on a fixed income.

In my case that's been a third of my monthly income. I know everyone is different. Hopefully with this 250% working disabled program it will be rectified but just because that happens I'm not going to stop there.

If we all continue to just roll over and take it, assume that's the way it is... nothing is going to change.

It's time that we stop expecting someone to do the right thing for us or be an advocate. There is only one thing that private insurance is interested in and that's making a profit any way they can and they will screw anyone in order to make it.

We need to take hold of the reigns and stop being victims of a system that is failing all AIDS patients. I implore you to find out who your state representative is and write them a letter and pardon the pun but say "WE'RE NOT GOING TO TAKE IT ANYMORE!"

I plan to go to my local GBLT center tomorrow and talk to them. Hopefully there is a lawyer out there with enough balls to take on this bureaucratic bullshit ( insurance companies, Medicaid, Medical, SSI, SSD, and the like) and defend the rights of the disabled who, unless they have been fortunate to have a trust fund, live on a fixed income.

In my lifetime before I became ill, I worked hard and paid into the system. Even though what I make is one that is a couple of hundred dollars above what the deem Low Income, I have a hard time making ends meet.I know I can't be the only one in this boat. To have part of that income, in which I can barely live on, taken by the private insurance companies just so they will supply the drugs that are beneficial in keeping me alive and support my quality of life, JUST AIN'T NOT RIGHT! I'm tired of living as a trapped victim of this flawed system.I'LL KEEP SHOUTING IT UNTIL SOMEONE THAT CAN DO SOMETHING HEARS ME!

Joe, as far as the formulary goes I believe that most urban areas have a Ryan White Planning Council entity. I know we do where I live. This may be something you wish to get involved in by attending meetings, or even applying to sit on the board. You might google around and find it.

Thanks Phillcia,I've been dealing with some survivors guilt and wondering what my purpose is for being here. That just might me the ticket to some answers for me. I just hope that everyone in every state can make their voices heard.

I feel that those of us that are long time survivors have been forgotten. The new kids on the block don't seem to really care since they are still working with health insurance, good numbers, and few drugs.

We are survivors and I'm sure the health insurance companies can't wait for the bulk of us to be gone. They want healthy HIV positive clients that have paid health insurance to make money on. We can't let them push us out by attacking our income and using it as a tool to deny us our right to the medications that keeps us alive. We are already in the poor house and they want to take even more.

I want to cry when I read threads like this. And I do. It really shouldn't have to be this way. I've been an ex-pat for nearly 20 years now and although I never could have imagined the ultimate benefit when I left the States, thank goodness...

Joe, I am one person who will NEVER forget the LTS amongst us. I only wish I had some influence on the American health care system. Hang in there, mate, if nothing else, you're an inspiration for those of us who have been living with this for less time. (12 years here) Don't for a minute think that isn't worth anything - it's worth the world to me.

"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

I don't have any advice to give to you, just hoping that you get things sorted out real soon. I haven't had to deal with the "system" yet. The system, meaning Medicare, Part- D, medicaid, Ryan White, or ADAP, or any of the other agencies. Still fortunate enough to be working and have group insurance through my employer. How long that will last?... I don't have a clue.

All I know, is I feel frustrated and angry right now, that you are having to go through this. ! And, As Ann stated, this has been a tough thread to read. Keep us updated.

Thanks guys. I really appreciate your words of kindness and support. Ann, your so right. No one with any kind of long term illness should have to fight this kind of fight. You'd think, especially in America.

I promise I'll keep you guys updated. Even if I win this fight I'm always concerned that there is another one ahead. I'm not going to roll over and just take what they dish out. I'm afraid there are so many that just don't have the energy to fight.

As I mentioned earlier in a previous thread, I wonder why I'm still here when there have been so many good people that have gone before me. I, like so many, like to think or feel that we are here to make a difference. I am going to try to do just that, make a difference. I don't know how but I'd like to think that God is there and will guide me in the right direction.

To those who have read this and think this is what your future is like all I can say is that we've come so far in medical treatments and I doubt you will ever have to endure a situation like mine.

This fight is not just for AIDS but for anyone that is dealing with a life threatening illness. If they have every been denied a drug due to insurance issues. Especially those who have worked their whole lives and paid into a system believing that it will be there for them when they need it.

I'm mentally preparing myself for tomorrow and the endless phone calls. I had hoped that I would get some legal coaching from someone but that hasn't happened. Tomorrow will be day 18 of being without some of my prescribed medications.

I plan to move my prescriptions to another pharmacy tomorrow called MOM"s Priority Pharmacy touting that they are committed to providing the best HIV/AIDS pharmacy care available. MOMS offers expert pharmacy care and delivery through its locations in New York, California, Washington and Florida.

They sound like they are what the pharmacy I'm with used to be. I think think with the merger with Walgreens they lost their edge.

I finally got my meds but the hoops I had to jump through. Thank God I was strong enough to do it but I'm a pitbull with things when I know it's the right thing to do. I called Walgreens Corporate and no one ever called me back. Hm I wonder what they will come up with next year. LOL

I finally got my meds but the hoops I had to jump through. Thank God I was strong enough to do it but I'm a pitbull with things when I know it's the right thing to do. I called Walgreens Corporate and no one ever called me back. Hm I wonder what they will come up with next year. LOL

Ok, so, the non-HIV-Meds are the ones, that you cannot get for free with ADAP right?..........so how did you get them, I do understand how ADAP works, and no matter what I did, I still had co-pays for non-HIV-meds (even going back 10 yrs ago when, I did have ADAP before Medicare Part "D") so, what hoops did you have to jump thur? do tell and post this info, it may help someone else who has problems paying for non-HIV-meds

« Last Edit: May 20, 2009, 08:17:29 PM by denb45 »

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"it's so nice to be insane, cause no-one ask you to explain" Helen Reddy cc 1974

I feel that those of us that are long time survivors have been forgotten. The new kids on the block don't seem to really care since they are still working with health insurance, good numbers, and few drugs.

We are survivors and I'm sure the health insurance companies can't wait for the bulk of us to be gone.

I know exactly how you feel, Joe. I feel the same way. Every year, since 1987, my care has gotten worse, and the cost of it has increased. I am now deemed "too high income" to receive the Charity Care Card that entitled me to 100% coverage of Medicare deductibles and copays at the University Medical Center where I get my care (Univ of AL at Birmingham).I received that lovely notice in a letter, which also stated that I owed them $2,884.

My income is $88 more this year than last year, and last year, I received full coverage. I am so tired of the constant fight to get what I need to stay alive, I'm not sure how much longer I can do it. I thank God every day that I feel pretty good, and am ABLE to fight; I have certainly been at a point in my life when I was not strong, and if I had had to deal with this type of issues in the 90's -- well let's just say I wouldn't be here now, writing this.

Medicare Part D is a disaster for those of us with chronic illnesses. I now live 11 months of my life each year in a "donut hole". I don't even LIKE donut holes! Right now I have had to stop taking Flomax, in preparation for cataract surgery. I plan to just stay off it, because I certainly can't afford it, and I am tired of begging agencies to help me pay for it.

They may end up killing me by keeping me from getting the meds I need. But I won't go quietly. I'll go to Montgomery and set up a cot on the steps of the Capital building. That sure would be a sad ending for a 23 year survivor of AIDS. I pray it won't come to that.

I feel your pain, Joe. Hope you get some help really soon my friend.

Alan

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"Remember my sentimental friend that a heart is not judged by how much you love, but by how much you are loved by others." - The Wizard of Oz

Okay guys, I'm sorry, didn't mean to abandon anyone and I'm more than happy to share what I've learned. In California we have Medical instead Medicaid.

I guess they want to keep this a secret or something because I had to write to my California Representative to find out about a group called the Consumer Advocacy Board. They told me about this program called the 250% working disabled program. All you have to do is, do is some type of work, any kind of work, in which you can provide a pay check stub or letter that shows you worked and earned income. That in itself automatically qualifies you for this program and in turn you receive "extra help" for you medications.

This means that for those people that make over what the government deems as above low income, with the help of this program, you automatically receive LIS (Low Income Subsidy.) This will help you to pay for your prescriptions that are not covered by ADAP and brings their co-pay down to zero or almost nothing. You will also have to pay a monthly premium. Mine is $24.00.

If your in California check with your Medical case worker. They should know all about it. I don't know, but if you have Medicaid, check with your case worker to see if there is a similar program.